Who is a good US doctor?

Hi i'm hoping to be travelling to America in the new year for help with my ME. I was just wondering if anyone could advise me on who to contact regarding testing and treatment of xmrv? The UK is very limited with drug therapies and also ME specialists, so I was hoping for some more help overseas. If anyone could give me a couple of names of doctors to contact I would be really grateful, i'm just hoping that someone might be able to help.

Senior Member

Yep, Klimas and Peterson are the world experts. Seeing them costs money because they run a bajillion tests, some of which insurance will not reimburse, but you'll spend a lot of money if you go to someone who puts you on a bunch of expensive supplements/stuff, anyway.

Senior Member

I spoke with somebody in his office. The waiting list is more than 1000 people, and he only sees one new sufferer per week. Thus, if everybody gets seen once, and in order, you will be seen in about 20 years.

So I'm interested in knowing what the likely amount of time is to wait.

(He's the guy I need, too, as I have unusual differential diagnosis issues in addition to Canadian 2003. It will take me months to fill out his packet and get all the medical records he needs.)

Chrissie, have you considered Meirleir in Belgium?
He is definitely looking into XMRV and has already treated lots of patients for virus or retrovirus, and he uses redlabs etc.
He is going to the U.S. now these days and mentioned XMRV to some patients he saw the other day.
He does use a lot of tests and the bill might add up, but judging by the patient blogs it is worth it.
(he also tests for enteroviruses and lyme and everything, and treats what he finds. Most have enteroviruses too.)

I had an appointment with Merlier in October, but I was advised by my Uk doc not to go as he wasn't able to offer anything new and I was slightly put off by some of his tests for fructose absorbsion etc. I didn't know he was looking into XMRV though, I think for now i'm going to see Kilmas, but thankyou for letting me know about Merlier I think I will definately contact him in future.

I'd be happy to see anyone! The only thing I think may be a problem with staying in the uk is getting access to drugs. I'm not hugely knowledgeable with regard to anti viral treatment but I think you need to be overseen directly with some of the stronger stuff? I don't think I would be able to get my doctor in england to do that. We are thinking along the lines of staying in the US for at least a few months if I was able to get treatment. I'm just not sure how the logistics of these things work!

Still working on it all..

Just a note on fructose malabsorption and testing. It's a worthwhile test, particularly if you feel better on a wheat free diet. The gut and neuro symptoms and more can certainly run hand in hand as many people have found when eliminating certain foods and addressing gut issues.
I'm on this little bandwagon because I have fructose malabsorption which my Dr had me test for. Going off the major problem food, wheat, made a significant difference to me.
I've become a patient of De Meirleir this year, and yes, he said to expect 6 months to see improvement and the process will take about 12 months.
Good luck with whatever you decide to do.

I'ts great to hear you are doing well with Dr Merlier. I wasn't disregarding fructose tests, its just my sister who was taking me to Belguim is a specialist dietician and she felt than in my case I would be demonstrating specific symptoms with regard to fructose and a few of Merlier's other tests. I hope my earlier post did not seem like I was disregarding any of the work he does.

Still working on it all..

No worries! I just wanted to point out the value of the testing. There are various degrees of malabsorption; it's not like we can have some symptoms so it's fructose. Symptoms may not be obvious either. I believe we really can't know without either testing or at the very least trialing a low fructose diet.
One of the leading dieticians here who I understand pioneered this fructose work has some info here: http://www.coeliac.com.au/fructose-malabsorption-info.html

I didn't think you were disregarding KDM's work, just that you feel it may not be right for you. Just to add that he uses a wide variety of treatments, including Nexavir as an antiviral for those he thinks need it.

I've yet to start KDM's approach. I get a management plan next week. So I'll know over the next 6 months or so how it works for me.